Prader-Willi SyndromePhase 3CARE-PWSNCT03649477
Phase 3 Study of Intranasal Carbetocin (LV-101) in Patients With Prader-Willi Syndrome
A Phase 3 study testing 3.2 mg intranasal carbetocin and 9.6 mg intranasal carbetocin in people with Prader-Willi Syndrome, run by Levo Therapeutics, Inc. at 24 sites in 3 countries.
Trial summary
This Phase 3 study is designed to test the effectiveness of intranasal carbetocin (LV-101) in participants with Prader-Willi syndrome (PWS). Carbetocin is an oxytocin analog (a man-made chemical that is like oxytocin). This study will also evaluate the safety and tolerability of LV-101. Read more about this study
- Who is it for?
- Ages 7 to 18 years
- Conditions the study is for
- Prader-Willi Syndrome
- What is being tested?
- 3.2 mg intranasal carbetocin and 9.6 mg intranasal carbetocin
- Could I receive a placebo?
- Yes, some participants may receive a placebo
- How many people
- 130 participants
- Where
- 24 sitesin 3 countries
- Study dates
- 20 Nov 2018to 9 Jul 2022
- Phase
- Phase 3
- Are there results?
- Yes, posted in the registrySummary in the doctors' view
Key requirements
Who can take part, as listed by the sponsor. Only the study team can confirm whether you are eligible, so take this list to your doctor.
- Ages 7 to 18 years
- All sexes
- No healthy volunteers
- Child, Adult
Who may be able to join
- Genetically-confirmed Prader-Willi syndrome
- Provide voluntary, written informed consent (parent(s) / legal guardian(s) of participant); provide voluntary, written assent (participants, as appropriate)
- PWS Nutritional Phase 3 (hyperphagic, rarely feels full)
Who cannot join
- Living in a group home
- Genetically diagnosed Schaaf-Yang syndrome or other genetic, hormonal, or chromosomal cognitive impairment
- New food-related interventions, including environment or dietary restrictions, within 1 month of screening
- Dose of any allowed chronic concomitant medications or supplements that have not been stable for ≥3 months prior to the study or is not expected to remain stable while participating in the study; adjustments in growth hormone dose ≤10% are not exclusionary
- Presence of cardiovascular disorders, epilepsy, frequent migraines, or severe asthma
- More than 3 episodes of sinusitis in the 12 months prior to Screening Visit or presence of nasal diseases that may affect deposition of intranasal medication
Show all 10Show fewer
- Unwilling to abstain from nasal saline, other nasal irrigation, or other intranasal medications for 2 weeks prior to the Baseline visit and during the 8-week, placebo-controlled period of the study
- Use of weight loss medication, oxytocin, carbetocin, or vasopressin in the 6 months prior to screening
- Participation in an interventional research study involving another investigational medication or device in the 6 months prior to screening or during the study
- Based on the judgment of the Investigator, is unsuitable for the study for any reason, including but not limited to unstable medical condition, inability to comply with the protocol, or other risk to subject or to the integrity of the study
Trial locations and contacts
24 sites in 3 countries.
24 sites in 3 countries
United States19 sites
Children's Hospital Colorado
Aurora, Colorado, 80045
University of Alabama at Birmingham
Birmingham, Alabama, 35233
University of Harvard Boston Children's Hospital
Boston, Massachusetts, 02115
Ann & Robert H. Lurie Children's Hospital of Chicago
Chicago, Illinois, 60611
Nationwide Children's Hospital
Columbus, Ohio, 43205
University of Florida
Gainesville, Florida, 32608
Texas Children's Hospital
Houston, Texas, 77030
Kansas University Medical Center
Kansas City, Kansas, 66160
Children's Hospital of Los Angeles (USC)
Los Angeles, California, 90027
Vanderbilt University School of Medicine
Nashville, Tennessee, 37212
Children's Hospital of Philadelphia
Philadelphia, Pennsylvania, 19107
Phoenix Children's Hospital
Phoenix, Arizona, 85006
Children's Hospitals and Clinics of Minnesota
Saint Paul, Minnesota, 55102
University of Utah
Salt Lake City, Utah, 84108
Children's Hospital of San Antonio
San Antonio, Texas, 78207
Rady Children's Hospital San Diego
San Diego, California, 92123
Cardinal Glennon Children's Medical Center
St Louis, Missouri, 63104
University of Oklahoma Health Sciences Center
Tulsa, Oklahoma, 74135
Children's National
Washington D.C., District of Columbia, 20010
Canada4 sites
University of Alberta
Edmonton, Alberta, T6G 2E1
CHU Ste Justine
Montreal, Quebec, H3T 1C5
Toronto Hospital for Sick Kids
Toronto, Ontario, M5G 1X8
British Columbia Children's Hospital
Vancouver, British Columbia, V6H 3V4
Australia1 site
Queensland Children's Hospital
South Brisbane, Queensland, 4101
About this study
Official title: Phase 3, Randomized, Double-Blind, Placebo-Controlled, 8-week Clinical Study to Assess the Efficacy, Safety, and Tolerability, of Intranasal Carbetocin (LV-101) in Prader-Willi Syndrome (PWS) With Long Term Follow-Up (CARE-PWS)
This Phase 3 study is designed to test the effectiveness of intranasal carbetocin (LV-101) in participants with Prader-Willi syndrome (PWS). Carbetocin is an oxytocin analog (a man-made chemical that is like oxytocin). This study will also evaluate the safety and tolerability of LV-101.
Read the detailed description
This is a Phase 3 randomized, double-blind study with an 8-week, placebo-controlled period designed to test the effectiveness, safety, and tolerability of LV-101 in participants with PWS.
Effectiveness will be measured using both caregiver-reported and clinician-reported measures of hyperphagia (extreme hunger), obsessive and compulsive behaviors, and anxiety. Safety and tolerability will be measured by adverse events, laboratory tests, and physical exams.
After the 8-week placebo-controlled period, there will be a long-term follow-up period of 56 weeks and an optional extension period after study week 64 during which all participants will receive active treatment with LV-101. At Week 8, participants who were randomized to placebo in the placebo-controlled period will be randomized to one of the two LV-101 doses, administered three times per day before meals.
- Conditions
- Prader-Willi Syndrome
- Being tested
- 3.2 mg intranasal carbetocin, 9.6 mg intranasal carbetocin, placebo
- Keywords
- PWS, Prader-Willi syndrome, carbetocin
- Medical subject headings
- Prader-Willi Syndrome
What participants receive
What participants receive. In a randomised study each person is assigned to one group by chance.
3.2 mg intranasal carbetocinDrug
Also called LV-101
three times per day with meals
9.6 mg intranasal carbetocinDrug
Also called LV-101
three times per day with meals
placeboDrug
three times per day with meals
| Study group | Role | What they receive |
|---|---|---|
| Placebo | Placebo comparator | matched placebo during first 8-weeks; prospectively randomized 1:1 to either one of the two doses of carbetocin during 56-week follow-up and optional extension periods Receives: Drug: placebo |
| 3.2 mg of LV-101 | Experimental | 3.2 mg of LV-101 during first 8-weeks; remain on same dose during 56-week follow-up and optional extension periods Receives: Drug: 3.2 mg intranasal carbetocin |
| 9.6 mg of LV-101 | Experimental | 9.6 mg of LV-101 during first 8-weeks; remain on same dose during 56-week follow-up and optional extension periods Receives: Drug: 9.6 mg intranasal carbetocin |
What is being measured
The primary outcome is the main question the study is designed to answer.
Hyperphagia Behavior
Change in hyperphagia (extreme hunger) as measured by the Hyperphagia Questionnaire for Clinical Trials (HQ-CT) Total Score versus placebo.
Score range: 0-36; higher scores mean a worse outcome. Reduction in score indicates improvement.
Measured: Baseline to Week 8
Obsessive and Compulsive Behaviors
Change in obsessive and compulsive behaviors as measured by the Children's Yale-Brown Obsessive-Compulsive Scale (CY-BOCS) Total Score versus placebo.
Score range: 0-40; higher scores mean a worse outcome. Reduction in score indicates improvement.
Measured: baseline to Week 8
Secondary outcomes (3)
Anxiety
Change in participant anxiety as measured by the PWS Anxiety and Distress Questionnaire (PADQ) Total Score versus placebo.
Score range: 0-56; higher scores mean a worse outcome. Reduction in score indicates improvement.
Measured: Baseline to Week 8
Global Impression
Clinical Global Impression of Change (CGI-C) score versus placebo. Score range: 1-7; higher scores mean a worse outcome. Reduction in score indicates improvement.
Measured: Week 8
Hyperphagia Behavior (Subset)
Change in hyperphagia as measured by the change in specified subsets of HQ-CT questions versus placebo.
Score range: 0-24; higher scores mean a worse outcome. Reduction in score indicates improvement.
Measured: Baseline to Week 8
Timeline
From the start of the study to its completion; the mark is today. Estimated dates are the sponsor’s plan.
- First posted28 Aug 2018
- Study start20 Nov 2018
- Primary completion13 May 2020
- Study completion9 Jul 2022
Resources
- Official record on ClinicalTrials.govThe registry entry this page is built from, with its full change history.
- Posted resultsParticipant flow, outcome measures and adverse events reported by the sponsor.
- Publications (2)Papers the sponsor has linked to this study.
- Other trials for Prader-Willi SyndromeStudies of the same condition, open and under way.
- What the trial phases meanHow a treatment moves from first tests in people to approval.
More details
For doctors and researchers: how the study is designed, who runs it, and its registry IDs.
Study design
- Study type
- Interventional
- Phase
- Phase 3
- Primary purpose
- Treatment
- Allocation
- Randomised
- Intervention model
- Parallel groups
- Model description
- Three parallel groups (two different doses of carbetocin and placebo) for the first 8 weeks; two parallel groups (two different doses of carbetocin) during 56 weeks of follow-up and the optional extension period
- Masking
- Quadruple blind
- Who is masked
- Participant, Care provider, Investigator, Outcomes assessor
- Enrolment
- 130 participants (actual)
Sponsor and investigators
- Lead sponsor
- Levo Therapeutics, Inc.
- Sponsor type
- Industry (pharma, biotech, devices)
- Responsible party
- Sponsor
IDs, dates and publications
- ClinicalTrials.gov ID
- NCT03649477
- Sponsor's protocol ID
- LV-101-3-01
- Acronym
- CARE-PWS
- Status last verified
- Aug 2021
- First submitted
- 24 Aug 2018
- Last updated
- 26 Jul 2022
- Results posted
- Yes, on ClinicalTrials.gov
- Data monitoring committee
- Yes
- FDA-regulated drug
- Yes
- FDA-regulated device
- No
- Individual data sharing
- No
Publications
Roof E, Strong TV, Stafford DEJ, Singh D, Roy SM, Doshi D, Zhang Y, Salvucci A, Youakim JM, McCandless SE; COMPASS PWS Investigators. Carbetocin Nasal Spray for the Treatment of Hyperphagia in Prader-Willi Syndrome: Results From the Randomized, Placebo-Controlled, Phase 3 Compass PWS Study. Clin Ther. 2026 Jul 22:S0149-2918(26)00234-1. doi: 10.1016/j.clinthera.2026.06.019. Online ahead of print.
PubMed 42486751Roof E, Deal CL, McCandless SE, Cowan RL, Miller JL, Hamilton JK, Roeder ER, McCormack SE, Roshan Lal TR, Abdul-Latif HD, Haqq AM, Obrynba KS, Torchen LC, Vidmar AP, Viskochil DH, Chanoine JP, Lam CKL, Pierce MJ, Williams LL, Bird LM, Butler MG, Jensen DE, Myers SE, Oatman OJ, Baskaran C, Chalmers LJ, Fu C, Alos N, McLean SD, Shah A, Whitman BY, Blumenstein BA, Leonard SF, Ernest JP, Cormier JW, Cotter SP, Ryman DC. Intranasal Carbetocin Reduces Hyperphagia, Anxiousness, and Distress in Prader-Willi Syndrome: CARE-PWS Phase 3 Trial. J Clin Endocrinol Metab. 2023 Jun 16;108(7):1696-1708. doi: 10.1210/clinem/dgad015.
PubMed 36633570
Study at a glance
From the registry record, last updated by the sponsor on 26 Jul 2022. Recruitment status is as the sponsor reported it: confirm with the study team.
- Official title
- Phase 3, Randomized, Double-Blind, Placebo-Controlled, 8-week Clinical Study to Assess the Efficacy, Safety, and Tolerability, of Intranasal Carbetocin (LV-101) in Prader-Willi Syndrome (PWS) With Long Term Follow-Up (CARE-PWS)
- ClinicalTrials.gov ID
- NCT03649477
- Acronym / sponsor ID
- CARE-PWS / LV-101-3-01
- Conditions
- Prader-Willi Syndrome
- Keywords
- PWS, Prader-Willi syndrome, carbetocin
- Phase
- Phase 3
- Study type
- Interventional
- Recruitment status
- Completed
- Enrolment
- 130 participants (actual)
- Lead sponsor
- Levo Therapeutics, Inc.Industry (pharma, biotech, devices)
- Study start
- 20 Nov 2018 (actual)
- Primary completion
- 13 May 2020 (actual)
- Study completion
- 9 Jul 2022 (actual)
- First posted
- 28 Aug 2018 (actual)
- Results
- Posted 17 Nov 2021
Clinical summary
The research question as the sponsor registered it. This describes what the study plans to test, not what it found.
This Phase 3 study is designed to test the effectiveness of intranasal carbetocin (LV-101) in participants with Prader-Willi syndrome (PWS). Carbetocin is an oxytocin analog (a man-made chemical that is like oxytocin). This study will also evaluate the safety and tolerability of LV-101.
Detailed description
This is a Phase 3 randomized, double-blind study with an 8-week, placebo-controlled period designed to test the effectiveness, safety, and tolerability of LV-101 in participants with PWS.
Effectiveness will be measured using both caregiver-reported and clinician-reported measures of hyperphagia (extreme hunger), obsessive and compulsive behaviors, and anxiety. Safety and tolerability will be measured by adverse events, laboratory tests, and physical exams.
After the 8-week placebo-controlled period, there will be a long-term follow-up period of 56 weeks and an optional extension period after study week 64 during which all participants will receive active treatment with LV-101. At Week 8, participants who were randomized to placebo in the placebo-controlled period will be randomized to one of the two LV-101 doses, administered three times per day before meals.
Study design
- Primary purpose
- Treatment
- Allocation
- Randomised
- Intervention model
- Parallel groups
- Masking
- Quadruple blind (participant, care provider, investigator, outcomes assessor)
- Number of arms
- 3
- Model description
- Three parallel groups (two different doses of carbetocin and placebo) for the first 8 weeks; two parallel groups (two different doses of carbetocin) during 56 weeks of follow-up and the optional extension period
| Arm | Type | Receives |
|---|---|---|
| Placebo | Placebo comparator | Drug: placebomatched placebo during first 8-weeks; prospectively randomized 1:1 to either one of the two doses of carbetocin during 56-week follow-up and optional extension periods |
| 3.2 mg of LV-101 | Experimental | Drug: 3.2 mg intranasal carbetocin3.2 mg of LV-101 during first 8-weeks; remain on same dose during 56-week follow-up and optional extension periods |
| 9.6 mg of LV-101 | Experimental | Drug: 9.6 mg intranasal carbetocin9.6 mg of LV-101 during first 8-weeks; remain on same dose during 56-week follow-up and optional extension periods |
Who may qualify
- Ages
- 7 to 18 years
- Sex
- All
- Healthy volunteers
- Not accepted
- Age groups
- Child, Adult
Key inclusion criteria (3 listed)
- Genetically-confirmed Prader-Willi syndrome
- Provide voluntary, written informed consent (parent(s) / legal guardian(s) of participant); provide voluntary, written assent (participants, as appropriate)
- PWS Nutritional Phase 3 (hyperphagic, rarely feels full)
Key exclusion criteria (10 listed)
- Living in a group home
- Genetically diagnosed Schaaf-Yang syndrome or other genetic, hormonal, or chromosomal cognitive impairment
- New food-related interventions, including environment or dietary restrictions, within 1 month of screening
- Dose of any allowed chronic concomitant medications or supplements that have not been stable for ≥3 months prior to the study or is not expected to remain stable while participating in the study; adjustments in growth hormone dose ≤10% are not exclusionary
- Presence of cardiovascular disorders, epilepsy, frequent migraines, or severe asthma
Eligibility is decided by the study team after screening; this overview does not establish that a patient qualifies. Full inclusion and exclusion criteria.
Interventions
| Intervention | Type | Arms |
|---|---|---|
| 3.2 mg intranasal carbetocinAlso: LV-101three times per day with meals | Drug | 3.2 mg of LV-101 |
| 9.6 mg intranasal carbetocinAlso: LV-101three times per day with meals | Drug | 9.6 mg of LV-101 |
| placebothree times per day with meals | Drug | Placebo |
Primary outcome
Hyperphagia Behavior
Time frame: Baseline to Week 8
Change in hyperphagia (extreme hunger) as measured by the Hyperphagia Questionnaire for Clinical Trials (HQ-CT) Total Score versus placebo. Score range: 0-36; higher scores mean a worse outcome. Reduction in score indicates improvement.
Obsessive and Compulsive Behaviors
Time frame: baseline to Week 8
Change in obsessive and compulsive behaviors as measured by the Children's Yale-Brown Obsessive-Compulsive Scale (CY-BOCS) Total Score versus placebo. Score range: 0-40; higher scores mean a worse outcome. Reduction in score indicates improvement.
3 secondary outcomes
Anxiety
Time frame: Baseline to Week 8
Global Impression
Time frame: Week 8
Hyperphagia Behavior (Subset)
Time frame: Baseline to Week 8
Results and safety
Loading the posted results from ClinicalTrials.gov…
Research links
- Official record on ClinicalTrials.govLast updated by the sponsor 26 Jul 2022.
- Posted resultsParticipant flow, baseline, all outcome measures and adverse events.
- Derived from this study: PubMed 42486751Roof E, Strong TV, Stafford DEJ, Singh D, Roy SM, Doshi D, Zhang Y, Salvucci A, Youakim JM, McCandless SE; COMPASS PWS Investigators. Carbetocin Nasal Spray for the Treatment of Hyperphagia in Prader-Willi Syndrome: Results From the Randomized, Placebo-Controlled, Phase 3 Compass PWS Study. Clin Ther. 2026 Jul 22:S0149-2918(26)00234-1. doi: 10.1016/j.clinthera.2026.06.019. Online ahead of print.
- Derived from this study: PubMed 36633570Roof E, Deal CL, McCandless SE, Cowan RL, Miller JL, Hamilton JK, Roeder ER, McCormack SE, Roshan Lal TR, Abdul-Latif HD, Haqq AM, Obrynba KS, Torchen LC, Vidmar AP, Viskochil DH, Chanoine JP, Lam CKL, Pierce MJ, Williams LL, Bird LM, Butler MG, Jensen DE, Myers SE, Oatman OJ, Baskaran C, Chalmers LJ, Fu C, Alos N, McLean SD, Shah A, Whitman BY, Blumenstein BA, Leonard SF, Ernest JP, Cormier JW, Cotter SP, Ryman DC. Intranasal Carbetocin Reduces Hyperphagia, Anxiousness, and Distress in Prader-Willi Syndrome: CARE-PWS Phase 3 Trial. J Clin Endocrinol Metab. 2023 Jun 16;108(7):1696-1708. doi: 10.1210/clinem/dgad015.
- Individual participant dataSharing planned: No
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Referral and contact
AzTrials does not enrol participants or take referrals. Contact the study team or a site listed below; they decide who can take part. This study is not recruiting at the moment.
The record lists no contact. Use the official record to reach the sponsor.
24 sites in 3 countries: see every site and its status.
Questions about this trial
What is this clinical trial studying?
A Phase 3 study testing 3.2 mg intranasal carbetocin and 9.6 mg intranasal carbetocin in people with Prader-Willi Syndrome, run by Levo Therapeutics, Inc. at 24 sites in 3 countries.
The full registered description is in the About this study section and the official record.
Who may be eligible to take part?
The sponsor lists 3 inclusion and 10 exclusion criteria. Eligibility is decided by the study team after screening, so read the full criteria and contact a listed site.
Is this clinical trial currently recruiting?
The record says: finished, as of the sponsor's last update on 26 Jul 2022. Status can change between updates, so confirm with the study contact before making plans.
Where is the study taking place?
The record lists 24 sites in United States, Canada, Australia. Whether a site is taking part right now should be confirmed with that site. See every site.
What are the possible benefits and risks?
They depend on the study and the treatment, and no study can promise a benefit. Some participants in this study may receive a placebo. The study team explains the known risks during informed consent, before anyone joins; the record itself does not list them.
What does this phase mean?
Phase 3 studies compare the treatment with the current standard treatment or a placebo in a large group, to confirm how well it works and watch for side effects.
Not every study follows the same path, and some studies (observational studies, device studies) have no phase.
Are results available for this study?
Yes. Results are posted in the registry (first posted 17 Nov 2021). A summary is in the For doctors view, and the full results are on ClinicalTrials.gov.
How can a doctor refer a patient or contact the research team?
The record lists no contact. The official record names the sponsor, who can be asked directly. AzTrials does not enrol participants or take referrals.
What does the primary outcome measure?
Hyperphagia Behavior (time frame: Baseline to Week 8). The study lists 2 primary outcomes in all. It is what the study was designed to measure, not a finding.
Where can I read the original study information?
On the ClinicalTrials.gov record for NCT03649477, which also lists 2 linked publications.
Does a listing mean the treatment is approved or proven to work?
No. A listing means the study is registered. It does not show that the treatment is safe, works, or is approved by a regulator.
How often is this information updated?
AzTrials copies changed records from ClinicalTrials.gov every night and reloads the whole registry every week. The sponsor last updated this record on 26 Jul 2022.